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Help 4 HD TV Episode 4 - Resources



Katie Jackson: Hello everyone and welcome back to another episode of Help 4 HD TV. Today we are going to be talking about three resources that are available at Help 4 HD that are virtual that you may need right now living with COVID 19 and during the pandemic. They've always been available to you virtually and for free for our community. Today we're going to talk about the three of them and how they may help you right now.


The three programs we're going to talk about today is LEEP. That's our law enforcement education program. Our newest program, our EMT program that really focuses on EMT, firefighters, first responders, more medical first responders. Then we're going to talk about just our normal everyday brochure, "What is Huntington's disease?".

I'm going to turn it over to Katrina to talk about why you would need these three resources right now.


Katrina Hamel: With the COVID 19 experiences that we’re all facing, we're stuck inside the same place day in and day out. We are dependent on each other for entertainment and lack of entertainment. So, when you're in the house with somebody with Huntington's disease or you yourself, have Huntington's disease and anxiety is heightened. There’re nerves over what's going on in the media. There's also a worry or concern about yourself or your loved one being able to continue doing the things that you are used to on a regular basis. Going outside of the house, going to doctor's appointments, different things like that. It creates, sometimes some behaviors. It does in myself and it does in my family. We all have some behaviors going on where we are a little outside of our regular behaviors.


What's great about these brochures is that it's something you can have on hand. If you find yourself coming in contact with a first responder, an EMT individual, or a law enforcement officer, even a firefighter. These types of professions need to understand what Huntington's disease is. We have specific brochures for each of the groups, EMT and law enforcement. They outline what these individuals might encounter when finding somebody in a home with Huntington's disease and how to best approach the situation.


"What is HD?" is a very descriptive brochure. We've had this on our website for years, and it details what Huntington's disease is and it gives some pointers and some tips of what it is as a whole and what people can expect when talking with somebody who may be cognitively impaired or physically having some troubles with their gait. Subjects that are not common with the rest of the population.


All of these brochures are extremely important to have on hand in case you come into contact with a first responder. You can hand them the information, you can show them what it is that your loved one has or you, yourself have. That will help them best serve you or your family member. Being prepared is going to keep a lot of the stresses down and it's also going to keep the interaction at its calmest.

Katie is going to pull up the publications on our website to show you how to find these and to navigate our website so that you can download them, print them out, and have them available.


Katie Jackson: One thing I really liked that Katrina said is to print these out and have these on hand. A lot of times in an emergency or crisis situation, running into a computer, trying to navigate the website, trying to find something, especially with the stress you're under, the stress your loved one's going to be under. It's really not the time to find paperwork. Getting your tools ahead of time is very important.


Now I am going to walk you through how to get to some of these resources on our website. Go to www.help4hd.org and this is our home page. You could find these other resources, but I think the best way to find them fast, the EMT and LEEP, are to go straight to programs.


When you go to the programs page, you will see one of our programs is the emergency response training, Huntington's disease. Here is where you are going to find download your brochure, these are free downloads. This is a video that was created by medical professionals as well as some people in our community, to help EMT understand all three components: cognitive impairment, physical, chorea, swallowing, choking, as well as behaviors.


If you go down here a little bit further. You will find our LEEP program, which is right here with the police officer cars.


Here's our law enforcement education program. Right here, you can download the brochure for free. I'm going to just pull this up so you can see it. Here it is: "Officer I'm not drunk, I have HD". It goes through a whole bunch of different facts. It's two sided because if you got this physically it would be in a brochure form. Lots and lots of information here. The video is really good because not only, if you want to do law enforcement training in your area, not only does it have medical professionals talking about Huntington's, but it has a lot of community talking about Huntington's, which is a very, very important.


As far as "What is Huntington's disease?" you're going to go to your resources for this. So, here's your resource tab. You're going to see lots of resources.


At the bottom here, you're going to see all of our brochures.


If you go down here is your JHD brochure and it will talk about juvenile Huntington's disease, in case you have a child living with juvenile Huntington's in the home. Here's where your brochure would be, and here is "what is Huntington's disease?".


All of these resources are completely free to our community and you can download them on our website.


Katrina Hamel: Along with the digital form, there's also a hard copy that you can receive in the mail and it would contain each brochure, and it would also have the flash drive with our videos on it. You can also find them on our website, but if you would like to bring them into your law enforcement office and do a preventative pre-training. You can let your law enforcement teams watch the video, introduce it into the rest of the department so that everyone can be trained.


This is a great tool for teaching law enforcement officers or first responders about Huntington's disease when they have somebody in their community that could benefit from the education.


If you would like to have a physical brochure you can contact us on our website www.helpforhd.org. But you can also reach out to Vicki Owen, who sits on our board, but is also the director of law enforcement education and first responder education. She can be found at vicki@help4hd.org. That's V-I-C-K-I at help4hd.org. You can also find her on Facebook under Vicki Owen, and you can send her a message and you just say that you would really appreciate one of our law enforcement training kits and she would happily send one your way.


Katie Jackson: Like Katrina said, things are very hard right now as far as a lot of anxiety, a lot of unknowns and fears can bring on behaviors. Law enforcement may have to get involved, first responders may have to be get involved if there's a fall or if there is a medical emergency.


A plug for the radio show. Today, the radio show went live about going to the ER right now during COVID 19. I found the show incredibly interesting because everything has changed. We used to go into the ER and sit in a waiting room and wait with our loved one and try to keep them calm. There are no waiting rooms anymore because of social distancing and trying to keep medical professionals safe. We did find out that in a lot of areas, not all areas, but in order to have a visitor or a caregiver go back with you, you have to be able to prove that your loved one could become combative and you are the only one that can keep them calm.


Or that they have cognitive impairment and they are not able to make their own decisions. How do you explain that to a medical professional? If you don't have your tools, you can try, but to have tools with you to help you, it may help the process go a little easier for you.


I would like to thank TEVA Pharmaceuticals for sponsoring our LEEP program and, year after year, helping us supply the flash drives and the brochures and make this a free program to our community as well as being able to go around and travel and educate law enforcement about Huntington's disease.


Plug to them, TEVA pharmaceuticals and Griffin foundation for keeping this program alive for us.


To listen to the radio show, it is available on blog talk, iTunes, Spotify. This last episode was very interesting about emergency services through COVID 19, so check that out.


Until next time, please like this video, subscribe to our channel down below and ring the bell for notifications. Until next time.

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